3.2.4 Fair Access to Carer’s Breaks Services for Parents and Carers of Children with Special Needs

SCOPE OF THIS CHAPTER

The principle of developing a fair arrangement for allocating Carer’s Break Services was piloted in the Mid Devon area and introduced in Torbay towards the end of 2007.

A major change from the model used in Mid Devon was the introduction of a points system for Calculating the Indicative Allocation. This reflects both the child’s nursing and care needs, as well as the needs of the carer - all in one document. This guidance represents the current position.

Disabled child with high level of challenging behaviour arising from the disability, exhibited in a range of settings.

When considering the above, if the diagnosis is unconfirmed but judged to be very likely, then Fair Access to Carer’s Breaks Services (FACBS) should generally apply - although ultimately it will be for managers to agree in these circumstances.

Families of children with special needs who are not included in FACBS may still be entitled to carer’s breaks. It is simply that the formula approach does not apply and each family should be considered for services in their own right. The Torbay project may include other children on the autistic spectrum or with other disorders in the future.

Children Looked After are not included in the scheme. Where a foster carer needs a carer’s break it must be considered as part of the boarding out arrangements and applied on an individual basis. Further guidance may be issued on this point.

1.2 Defining Carer’s Break Services

The interpretation of what constitutes a carer’s break is very wide. It includes all services meeting the child’s needs that have the effect of allowing the carer some kind of ‘break’ from caring. The exception to this is the ‘break’ given when the child goes to school - although there are special arrangements where a boarding arrangement exists.

Although these proposals are chiefly concerned with breaks for carers it is vital that all services used should also meet the needs of the child. The two should be jointly planned. Key workers should be satisfied that the child’s needs are always properly considered, and in extreme circumstances the allocation can be withdrawn if it is shown that the arrangements are not in the interests of the child or young person.

In calculating entitlement most services for the child are taken into account. However where the services for the child, which have the effect of a carer’s break, do not sufficiently satisfy the needs of the parent or carers, (for example because they are at the wrong time or are not long enough) then there is discretion to increase entitlement - see Section 1.4, Guide to Unit Costs).

Services whose purpose is solely for education, training or treatment should not be considered as carer’s breaks. Neither should time limited and specific assessments - although there may well be an assessment function in many carers’ breaks services.

The service does not necessarily have to directly provide a break between carer and child, although this would normally be the case. Domiciliary care to assist the carer at critical times may be a preferred alternative, and this is acceptable.

In some cases the boundaries may still be unclear; these cases will be for management discretion.

Some services that would be included are:

John Parkes Respite Unit;

Independent sector residential units such as Robins;

Family based care (Family 2 Family) service;

Respite with other foster carers - except where it is respite for longer term foster care;

Social or health care provided by special boarding schools - such as by extending to weekend e.g. Oaklands/Dame Hannah Rogers;

The Indicative Allocation (IA) may also be used to purchase services for siblings providing that:

It is part of an overall carer’s break approach;

The carer’s break from siblings is at the same time as an arranged break for the child with special needs;

It is explicitly agreed as part of the care plan - or subsequently agreed by the key worker;

Any arrangements are consistent with the interest and wishes of the sibling(s) as well as the child with special needs.

Some areas that are not included are:

Services where the main function is for assessment, treatment or education - such as community development centre assessment units;

Where a child is subject to significant welfare concerns or specialist requirements (such as a terminally ill child) and where managing this requires a complex package of care funded from health finances or Section 17 money. In such cases the carer’s break entitlement would be considered first, with any additional need funded as described;

Where a child has a very specific need that is in no way, or only very tenuously, connected to a carers break - such as the need for specialist equipment, housing, or items related to nursing care or child safety;

Personal care of a child when there is a genuine reason (other than that of giving carers a break) why this cannot be done by the parent or carer - such as a disabled parent or gender considerations such as male single parent and older female child;

Services primarily designed to support family functioning - such as family support workers and behaviour management.

1.3 Calculating the Indicative Allocation

The IA is described in the form of a cash equivalent. This is the most practical way of including a potentially diverse set of services. Services, to the cash value are based on the IA and may used flexibly over a 12 month period in accordance with the parent’s or carer’s wishes as far as possible.

The IA is based on both the carer’s and the child’s needs according to the points assessment and its actual amount will be read off against the total points in the financial table developed for Torbay.

The IA is not an entitlement, but a guide. Children’s Services Managers have discretion to vary the actual allocation up or down, although if it is down a good reason should be given. The need for services does have to be established and carers are not expected to seek more than might be required simply to make up their allocation. Where there are siblings all of whom may be separately eligible to be considered under FACBS, each will have their own individual allocation. However where the same arrangements can be made for both children at no extra cost (a single enabler or sitter) then a reduction to the total should be made.

As a broad guide the allocation for two children able to share the same carer and attracting roughly the same IA should be approx 75% of the total. If all children need entirely separate carer’s breaks then the full amount will apply. Clearly there may be compromises between these two positions.

The actual amount of the IA, as set against the points, is based on the total budget potentially available for this group of children and young people, with a small contingency for additional discretionary payments. If a family does not need or use their IA, the savings will be available to be added to this contingency and will be available for other families where there might be additional difficulties. Parent and carers should be made aware of the fact that savings will not be clawed back to support overspend in unrelated areas.

For children placed in residential schools, one of two scenarios will apply:

Where a child has been placed solely for education reasons the IA will be pro rata for the number of nights the child spends at home.

Where a child has been placed in a residential school, or where care has been extended, in order to give carers a break, the full entitlement and the additional costs will apply. So the extra cost of boarding on week days or staying over the weekend would be a positive choice for parents using their IA.

Detailed guidance on applying the points model is given elsewhere. The assessment for points should be undertaken by the child’s key worker/lead professional, with the parent/carer. The points scoring should then be carried out in liaison with other professionals involved with the child and family if carer’s breaks are requested. If there is already an up to date nursing assessment this should be consulted first as many of the categories in the points assessment correspond to those in the nursing assessment. However the points assessment can be used without the nursing assessment being completed if the child’s points come to 35 or less. If the child’s points come to over 35 then a nursing assessment will have to be completed, although the points assessment may act as a guide until this can be done.

A nursing assessment should be completed in the following circumstances. If:

The child’s points exceed 35;

The key worker specifically requests it to help clarify nursing issues;

The parent or carer requests it;

Clarity is needed on a funding issue with Torbay Council or Health;

It is requested by the Integrated Joint Agency Disability Services Operations Manager, to help resolve a disagreement.

All parent and carers should also be offered the opportunity to complete a further carer’s assessment, but it is not necessary to complete this before applying the points assessment.

The points assessment is as prescriptive as is reasonably possible, but it is impossible to cover all variations of child and carer needs in a totally prescribed way. When a certain attribute or behaviour does not correspond, or corresponds badly, to a descriptor then the key worker should use their professional judgement to score in a fair and balanced way according to the overall descriptors in that sub section.

Points are only scored for the difference in behaviour to that which we would normally expect in a child without special needs of the same chronological age. In many parts of the points assessment age related adjustments are built in. Elsewhere professional judgement should be used if appropriate.

It is vitally important that accurate and objective assessments are made, and that they are fairly strictly conducted. If they do not sufficiently reflect actual needs, then the carer or child will loose out. If they are overgenerous then there will be insufficient funding and entitlement and the value of the IA may need to be reduced across the county, affecting all families.

However, this is not a perfect system and there are a number of situations where it can be argued that a family should get additional help. A list of exceptions for going above the IA is outlined in 2.4. It is important that these exceptions are agreed through management discretion, and not by adjusting the total scores.

Full guidance on how to use the points assessment is separately available.

Temporary factors or difficulties should not be scored within the points assessment. Instead they are a recognised exception coming under management discretion. As a general rule temporary means likely to last between four and six months.

As far as possible, at least two professionals should be involved in the scoring of the assessment. However, a moderation process is being developed to ensure there is consistency in the way in which the descriptors are being interpreted.

Where parent or carers do not agree with the interpretation of the descriptors, they can ask the Service Manager or Integrated Joint Agency Disability Services Operations Manager, for a re- consideration in the first instance. If agreement can still not be reached then Torbay Council’s complaints procedure should be invoked.

1.4 Guide to Unit Costs

Calculation should include the full cost of services. Where specified; unit costs are likely to be updated on an annual basis.

John Parkes Unit

An average cost has been calculated and this will apply to all children irrespective of their level of difficulty or the number of places they take up. Where additional funding is sought from the Council or from health it will not be set against the child’s allocation as it will already been taken into account when calculating the average cost.

The actual cost as required by the school. This applies whether the school is a DCC school, e.g. Oaklands Park, or an independent school elsewhere e.g. Dame Hannah Rogers.

Family Based (F2F) Care

This cost will be based on the average unit cost for an overnight stay or day time care by a Torbay Council F2F Carer.

Respite foster care

Full cost is the actual boarding out costs.

Day care and play schemes

Actual cost as charged to parents plus any individual charges made to the Integrated Joint Agency Disability Service.

Befrienders, sitters, ‘personal carers’ or intervention workers

Actual cost if agency based or schedule of costs if in-house.

Housework (Cleaning etc.)

Actual cost to Torbay Council of agency work.

Transport

Cost of taxis etc: to services in most circumstances.

Childminders and other providers

Actual costs to Torbay Council.

NB Direct Payments.

This is a method of paying the indicative amount (or other agreed amount) given following assessment. Families may use their Direct Payments in a very flexible way, just so long as it is used as a carer’s break in some way and its use is consistent with the needs of the child. Additional guidance is available governing the use of direct payments.

Direct payments can be used for part of the allocation only if desired. They cannot be used to directly purchase Torbay Council or Health services, so if parents wish to purchase these, an appropriate amount from the indicative allocation will have to be held back from the DP.

I.As should normally apply for 12 months at a time, although there will always be situations where a review is needed earlier. A document will be designed to capture all the relevant financial information. When changes are made mid year that document will need to clearly indicate whether it contains additional information only, or whether it is a complete restatement of services.

Transport costs are normally included in the service costs, but where they are not they should be recorded in the appropriate section.

1.5 Exceptions above the IA

There are a number of circumstances when services costing above the IA can, and even should, be granted. In all cases they must be agreed by the Integrated Joint Agency Disability Services Operations Manager or their equivalent.

Where there is a temporary change in circumstance that has increased need in the short term and it is inappropriate to formally re-assess;

Where the preferred service is not available, and has to be substituted for a more expensive one;

Where transport costs are excessive;

Where very specialist care is required, beyond that allowed for in the calculation of points;

Where the carer’s points have been capped at the same level as the child’s points (see points guidance) and it can be demonstrated that this is unfair;

Where the age related reductions for a younger child have been made, but that child still needs, because of particular difficulties, access to high cost services;

When services for the child are treated as Carer’s Break Services because they have that effect (see Section 1.2 Defining Carer’s Break Services), but they are not of the preferred nature and/or at the preferred time or both to fully suit the carer’s need.

This may also include the situation where the service is primarily intended to meet the needs of the child, but it is also a carer’s break This may save administrative difficulty in separate coding for the same service - for instance an agoraphobic or withdrawn child needing encouragement by an enabler to develop outside interests and social skills. The IA may be low, but the needs of the child high;

Where the child is at risk (through parent’s mental health problems, substance misuse etc) and additional carer’s breaks are needed and appropriate. However in these circumstances any additional funding of carer’s breaks and other services may be more appropriately taken from Section 17 money and not considered as part of FACBS. The main exception would be where FACBS services are already being accessed and an increase in the same provision is justified. This will save administrative difficulties in commissioning and financial coding;

Where siblings are at substantial risk or are very distressed and need further protection and/or time with their parents;

Where behaviours score in only a few areas, but are so extreme that the overall score does not fully reflect the need;

If there are specific legal obligations.

All reasons for exceptions must be clearly recorded.

1.6 Responsibilities and Authorisations

The key worker/lead professionals will be responsible for scoring the points assessment but in liaison with other staff as required as well as the parent or carer - who must have the opportunity to put any disagreement in writing. The parent or carer should be given a copy of the points assessment, and its guidance if requested.

Service managers must be satisfied that the total score broadly reflects actual need. If insufficient they and the key worker or both should make a recommendation to the Integrated Joint Agency Disability Services Operations Manager (or equivalent) for a discretionary addition, specifying which exception criteria applies.

A service manager can authorise services up to the value of the IA, but the Integrated Joint Agency Disability Services Operations Manager may wish to set a financial limit to this.

At the time of writing only Integrated Joint Agency Disability Services Operations Manager can authorise services in excess of the IA, although it is possible the position will be modified here.

Currently any package of care over £25,000 must be brought to the MAP Panel for approval.

1.7 Historical and other Transitional Exemption

Where there has been historical use of a particular resource, or where the allocation changes as a result of implementing the points assessment then protection can only be guaranteed up to the date of the next review. After that time full or partial protection may be given at management discretion for a further 12 months, but beyond that time continued exemption will normally only be permitted if the child meets one of the other exception criteria.

Where the allocation changes as a result of change of circumstance relating to either the child or carer then, following a review, protection can only be agreed for a maximum period of three months.

2. Annual Reviews of Resource Allocations

Health and social care services will define the financial resources available to this area of service annually. This overall financial envelope will inform the IAs as they correspond to the table of points. New figures will be set annually and, as long as there is no evidence of overspending in this area, will be adjusted for inflation. Any further variance will depend on the net affordability within the scheme.

If demand for services using the FACBS framework exceeds the financial envelope, then individual services based on the IAs will be honoured for 12 months, but could then be adjusted downwards. Every attempt will be made to stop this from happening.

Social care services and health have a responsibility to achieve financial balance across all their services. In the most exceptional circumstances, this may require a mid-year reduction in the annual financial envelope. Any such decision, and its likely consequences, would be explained in person to the locality or county parent carer forum or to both.

Appendix 1: Principles

These criteria have been drawn up following consultation with parent and carers across Devon and will be discussed with parents in Torbay before the scheme is fully implemented.

The key principles are:

The allocation of family and carers support and break services should be based on a combination of the carer’s assessment and the complexity of the child’s needs;

The method of resource allocation should be transparent;

All current Carer’s Break Services will be used - this is not about cutting costs;

Carers should be able to predict resource allocation for 12 months in advance;

Support services for parents and carers should be appropriate for the ages and interests of their children;

The carer’s assessment process must take into account the needs of the child’s siblings;

Carers and young people should have choice about the type of service provision they receive, and when they receive it;

As many families as possible should receive at least some benefit.

Appendix 2: List of Exceptions

Code

Reason

A

Where existing Care plans or other agreements already exceed the maximum allowance (historical exemption) or where there are other transitional agreements.

B

Where there is a temporary change in circumstance that has increased need in the short term and it is inappropriate to formally re-assess.

C

Where the preferred service is not available, and has to be substituted for a more expensive one.

D

Where transport costs are excessive.

E

Where very specialist care is required, beyond that allowed for in the calculation of points.

F

Where the carer’s points have been capped at the same level as the child’s points (see points guidance) and it can be demonstrated that this is unfair.

G

When services for the child are treated as Carer’s Break Services because they have that effect but they are not of the preferred nature and/or at the preferred time to fully suit the carer’s need.

(N.B this may also include the situation where the services are primarily intended to meet the needs of the child, but it is also a carer’s break - to save administrative difficulty in separate coding for the same service - e.g. an agoraphobic/withdrawn child needing encouragement by an enabler to develop outside interest/social skills. The indicative allocation may be low, but the needs of the child high).

H

When the child is a risk - see main guidance also

I

Where siblings are at substantial at risk or are very distressed and need further protection and/or time with their parents.

J

Where behaviours score in a few areas only, but are so extreme that the overall score does not fully reflect the need.

K

If there are specific legal obligations.

L

Where the age related reductions for a younger child have been made, but that child still needs, because of particular difficulties access to high cost services.